can anyone PLEASE help me?? :(

(39 Posts)
purplerainbow Mon 17-Dec-12 19:28:58

Ill try to keep this as brief as possible so please bare with me.

Ds2 is 4.1. He was born term normal delivery. Was poorley since birth. Very bad reflux, osophagus was damaged, was on various meds for 2 years. He has had digestive 'problems' of which wasnt really ever resolved. Was always in discomfort in his tummy, was tried on various medicated formulas. When he was weaned he couldnt digest any 'protein' foods. Would struggle to poo and had awful tummy ache. This improved with age. He was put on movicol due to constipation about 18 months ago.

He had severe sleep apnea and had his enlarged adenoids and tonsils removed at age 1.

He was also VERY bunged up and his chest very rattly. He had a test for CF was negative. He was under gastro aswell as ENT. The ENT probs have improved with age/drugs. He has had various biopsies taken, and had his nasal passages quortorised last september but this failed to help him. ENT then discharged him as they felt they couldnt help and he would 'grow out of it'.

His paed and GP decided to trial inhalers as his brother has bad asthma. This has helped his rattly chest and night cough.

SO....He is on half a sachet of movicol a day. If i stop this he gets bunged up. He is on a steroid for the asthma. 2 puffs twice a day. He is on singulair tablet for the asthma side of things (tried coming off these few months ago and chest deteriorated so back on them) he is on nasacort nasal spray for his nose/bunged upness. He had allergy tests done and nothing showed up although i keep him off wheat and dairy.

He has NEVER been a good sleeper. When he was a baby it was down to pain/sleep apnea. He stopped napping at age 2. He has had sleep studies done in the last year to check sats, they think he is just sleep walking and will 'grow out of it'. Since he was put in a bed at age 2 and a half has got out of bed repeatedly during the nightm up to 6 times. Have always put him back to bed and he goes back to sleep. He doesnt talk, or do anything, so the doctors are convinced he sleep walks to me at night. I used to sleep walk so im quite open to this suggestion. He is currently on melatonin to try to keep him asleep but its having no affect. He snores quite badly, not frm the back of the throat noise a man makes, it comes from his nose and does disturb him. He also thrashes around. I dont just mean the usual sleeping in odd positions like kids do, i mean for half the night he tosses and turns and moves so much.

Ive seen a sleep specialist who was lovely but said im already doing everything she wouldve suggested. Sticker charts, rewards, putting him straight back to bed when he gets up. NOTHING MAKES A DIFFERENCE! Im so tired that lately when he comes to me in the night i just stick him in my bed as im not awake enough to remember to get out and put him back! So at the moment he goes to sleep in his own bed and wakes in mine. Iv had enough and cant cope much more. I just dont understand whats going on. If he comes into my room and i put him straight back to bed, this could happen say 4 times a night, in the morning hes ADAMENT he slept in his own bed all night!

Im so sorry this is so long and boring but its really affecting us 3 and our relationships at home as we're so tired sad

peachypips Mon 17-Dec-12 19:36:25

Oh you poor poor thing. That sounds so worrying and must be grinding you all down so much. There's nothing like lack if sleep and constant anxiety to ruin your life :-( .
I am sure you have tried this/thought of it but how about a stair gate on his door so he can only sleep walk in his room? Even if he falls back asleep on the floor it wouldn't make much difference to his sleep quality by the sound of it, and you and OH would at least get a full night. Xxx

purplerainbow Mon 17-Dec-12 19:39:32

Im on my own with 2 ds. Trouble is he shares a room with ds1 so if i put a gate on (have tried) he wakes his brother then i have the pair of them up! Im not convinced it is necessarily sleep walking....im just open to the suggestion. All i get is 'he'll grow out of it' and if he IS sleep walking hes done is solidly for 2 years! From what iv read about it im not sure as apparantly its common for it to start in the first half of the night but he never gets up before midnight...

thanks for reading my epic post!

purplerainbow Mon 17-Dec-12 19:42:29

The thing that im worried about is that about 6 months ago or so he started to lose weight. Dropped 3 centiles. Very tired in the day as he is now and grouchy. Did bloods and all were fine, did very thorough ones, only thing they couldnt rule out was coeliacs disease as they didnt have enough blood. Hes stopped losing weigh just doesnt seem to be putting a great deal on. So i cant help but feel the weight issue isnt down to something physically wrong...ie coealics...that perhaps the lack of sleep is now affecting his growth etc? He has speech problems that we are waiting to see speech therapist for but was told could be down to having the enlarged adenoids and tonsils.

peachypips Mon 17-Dec-12 19:51:07

Sleep is def important to kids' development so it could be slowing him up. Could either of ur kids sleep elsewhere? Do you have a dining room that could become a bedroom, or a sofa bed in the lounge? Then you could pen him in!
Sorry you are on ur own. Bad enough when there's two of you but worse when it's just you.

sunshinerainyday Mon 17-Dec-12 19:55:45

I have been through a similar experience with DS3 for the first four years of his life. Your sleep specialist doesn't sound like they are experienced enough to deal with this. You need to seek further help as this can be resolved but you do need guidance. I used the help of phone support with a children's sleep clinic in London (not sure I'm supposed to mention the name of it) and it worked. I had to wait until his adenoids had been removed and grommits put in for it to work as he also had sleep apnea and pressure in his ears at night from a baby. I also had to wait until we could afford the consultations but it was worth every penny. The first bit of advice I had was to make sure my partner and I took it in turns to have our first four hours sleep a night untinterupted by sleeping downstairs as this is your core sleep that you need for brain function. Hang in there and dont expect to be able to cope with regular life as you're not going through a regular experience. You will come out of the other side of this . xx

purplerainbow Mon 17-Dec-12 19:58:35

I have paid for telephone consultation with a company who REALLY helped with ds1...however they could not offer any help with ds2 a they said i was doing everything 'right'. I dont have anyone that will take it in turns. I have to do it by myself.

sunshinerainyday Mon 17-Dec-12 19:58:48

could a relative help with first few hours of the night as you cant take it in turns with a partner? My son was incredibly boistrous when sleep deprived and stuttered to stammer and lose interest in food and all these symptoms stopped when he was getting good sleep again.

purplerainbow Mon 17-Dec-12 19:59:24

sunshine how did you know your ds had pressure in his ears? My ds had a hearing test early this year but all was ok.

purplerainbow Mon 17-Dec-12 20:01:21

i dont think this is a habitual problem as he there is the odd night he'll sleep through, plus he sleeps no better when hes in my bed so its not as though he just wants to be in my bed.....it would be easier if that was the case! I think its a medical/physical problem

sunshinerainyday Mon 17-Dec-12 20:03:29

He had glue ear and which was making him deaf, an Ear Nose and Throat consultant can see if adenoids are enlarged with an examination as this can make them repeatedly wake through the night. It could be that he used to have this problem but has now learnt the behaviour.

NotWankinginaWinterWonderland Mon 17-Dec-12 20:04:56

This sounds a lot like DS2, he slept eventually right through most nights when he started school, I know that may not be what yo want to hear but he does sleep though most nights now, he is 8. I remember the reflux and chest problems and I am sure he trained himself to wake up!

sunshinerainyday Mon 17-Dec-12 20:05:15

I also had a gut feel that it was a physical problem and it turned out it was and that I hadn't been going crazy all along trying sleep techniques and finding they didn't work.

purplerainbow Mon 17-Dec-12 20:05:32

I solidly have put him straight back to bed for 2 years. Each time he gets up. I have tried sleeping on the floor next to his bed and yes this stops him getting out of the bed but doesnt stop him trying, he'll sit up and i just put him back laid down and tuck back in and hes fast asleep again!

purplerainbow Mon 17-Dec-12 20:06:59

i want to know whats still causing the snoring and why hes so restless when hes asleep? I think that is the route of the problem...

sunshinerainyday Mon 17-Dec-12 20:09:02

I was told to put them back next to their bed, but that they had to climb into their bed themselves so there was no dependency on being put back in to bed even. we also rigged up a rattle against our door so he couldn't creep in unnoticed.

NotWankinginaWinterWonderland Mon 17-Dec-12 20:10:20

Is it a constant wheezing noise purple?

FrustratedSycamoreSnowflake Mon 17-Dec-12 20:11:22

Is the melatonin time release or all in one go?
The latter gets them to sleep but doesn't keep them asleep, if it is the time release is the dosage okay?
(Also with melatonin it works better if breaks are taken regularly,)

purplerainbow Mon 17-Dec-12 20:13:27

im not sure it is 'kidnaps'. Its the only one can get from paediatrician. Hes on 6 mls.

No its more rattly than wheezy...that has got much better since starting inhaler

NotWankinginaWinterWonderland Mon 17-Dec-12 20:29:32

My son was checked for the same sounding noise, still to this day I have no idea what it was, mine only ever did when he slept, so it was difficult to have a Doctor listen, we even took him to hospital to have a sleep and be monitored but sure enough,he wasn't wheezing/rattling/noisy enough.

I'm sure he grew out of it by 2nd year in Nursery

purplerainbow Mon 17-Dec-12 20:35:51

Iv just put the chest noise down to asthma as since hes been on the inhaler he doesnt really do it anymore, only if he gets a cold

FrustratedSycamoreSnowflake Mon 17-Dec-12 20:36:58

Does he have any sensory issues?
We have been advised to tuck dc up very tightly in bed (an extra sheet, long ways across bed, firmly under mattress on both sides) which helps give dc the sensation of being hugged, and helps dc resettle.

purplerainbow Mon 17-Dec-12 20:40:09

sensory issues in what way? He gets very hot and sweaty at night and if i tuck him in tight he kicks at the covers (in his sleep) until they come off sad

FrustratedSycamoreSnowflake Mon 17-Dec-12 21:06:11

Sensory as in touch, does he respond "normally" to touch?
(My dc is (amongst other things) hypermobile, which is, on a basic level, extremely double jointed but the way the OT described it was that dc wasn't getting the same feedback that you or me get from objects, so for example big firm hugs feel like a light hug, but a tiny scratch can be agony.

Can he regulate his temperature okay during the day? (Also have a hot water bottle child), could he be getting hot, kicking off blanket, the getting cold again which wakes him?

It might be a case of trial and error trying to figure out the cause and cure of waking. And even then something that works one night might not the next. But I do hope you all get some decent sleep.

purplerainbow Mon 17-Dec-12 21:19:09

hes always been 'warm', both ds are. they dont seem to feel the cold like i do!

I dont think he has any sensory issues that im aware of and preschool certainly havent mentioned anything either.

purplerainbow Mon 17-Dec-12 21:21:36

he sleeps in a proper sleepsuit aswell now just incase he does wake up cold but cant see any difference. Ds1 doesnt wake up at all in the night from anything, onlly the odd bad dream

purplerainbow Tue 18-Dec-12 07:40:13

Another awful night. I left him to stay in my bed when he came in as just too tired to put him back in his. He sleeps in really odd positions, spent the whole night upside down, fritting about, kicking me. I have a king size bed to myself so you'd think that was space enough for a small 4year old and me! So so fed up sad

sunshinerainyday Tue 18-Dec-12 21:06:00

sorry to hear it was another bad night for you. It is so tough carrying on day after day with disturbed sleep. Can you put a mattress on your floor and surrender your bed for a few nights and sleep on the floor in your room with him in the big bed until you have the strength to battle it all again?Its those first few hours that you go to sleep that are so important for you. x

purplerainbow Wed 19-Dec-12 07:12:36

I tried doing that for 2 weeks. I slept on the floor beside him. Every time he sat up just laid him back down. Made no difference. I sleep just as bad in his room as he snores and doesn't stop moving sad

Last night I made HIM a bed on his floor to see if he needed more space.....nope he still got up. I have a fed ache from lack of sleep.

MistyB Wed 19-Dec-12 07:27:03

Does he breath through his mouth?

purplerainbow Wed 19-Dec-12 07:35:02

Yes he does. Another pointer toward sleep apnea but as I said, he had severe sleep apnea as a baby, would stop breathing for very long periods, confirmed by sleep study. He had enlarged adenoids and tonsils and it really helped/improved when they removed them. So I can't see what else could cause this? He is actually under weight now so can't use his weight as a cause either.

purplerainbow Wed 19-Dec-12 07:36:12

Btw, the stopping breathing isn't regular and isn't for that long and apparently its quite 'normal'

MistyB Wed 19-Dec-12 08:25:20

Google Buteko technique and look at the book, Close your Mouth by Dr McKeown, should come up on Amazon if you search for Buteko. It is a simple book that talks about how to teach yourself / your kids to nose breath. I know it doesn't work for all asthmatics but it can be really effective. I slept with my son for three nights during an asthma episode with him lying on his side and I put my hand under his chin. We also regularly lie on our tummies to help breathing posture and remind him to breath through his nose. It has helped his mucus production, his chest and his sleep.

purplerainbow Wed 19-Dec-12 08:39:34

Thanks, I shall have a google later. Trouble is he doesn't keep still! Not sure how I'd be able to hold his chin etc. Shall definitely have a look online for it.

MistyB Wed 19-Dec-12 16:25:11

It should kind of snowball. Nose breathing during the day and as you can at night, more settled sleep, more nose breathing at night.

IME, it's like peeling an onion, you have to address each of the health issues as they arise and bit by bit hopefully your DS will improve and sleep will follow.

Sadly, there is no magic solution and not everything works for every child.

Good luck! You must be at your wits end.

purplerainbow Wed 19-Dec-12 17:38:31

First half of the night he generally sleeps ok, asleep by 7pm and then normally fine until about 12 oneards

purplerainbow Wed 19-Dec-12 17:38:49

Onwards

MistyB Wed 19-Dec-12 20:17:24

Perhaps if you could get him to nose breath for that bit between 7 and 12 he might not fill up with mucus, over breath (a Buteko term) and he might get a bit more restful sleep in the next slot and then move it forward over time (if it works, I wish I could guarantee that this was the solution for you, God knows you have tried enough avenues!!)

If you wanted to try it...

Use the nose clearing exercise during the day.
Get him to close his mouth through the exercise.
Breath out through his nose
Hold his nose without breathing in first, and gently nod his head backward and forward for as long as is comfortable, try counting to ten first.
Breath in through the nose, then continue breathing through the nose.

It may take a couple of repeats to get his nose clear and to get the technique right.

Then during the day, remind him to breath through his nose only and to close his mouth. If yu can get him to lie on his tummy up n his elbows while watching TV playing a board game or reading a book with you, while you check he is nose breathing, this will all help to get this to become a habit.

Then at night, you are his 'guardian angel' watch him and gently close his mouth if it falls open. He should sleep on his side in the fetal position.

(His history is very similar to my boys, though they have not been as ill as your DS, the gut problems, wheat and dairy, mucusy, going from one specialist to another, being told they will grow out of stuff and being discharged when the problem has not gone away - I feel for you!!)

purplerainbow Thu 20-Dec-12 07:11:00

Wow u sound so knowledgeable on it, thanks! Shall give it a go. Last night I slept on the floor next to his bed. This is wierd, for the first half the night he actually slept worse than the second half. He kept me awake for a while just tossing and turning, going upside down. He puts his body in odd positions. Then he snorts when breathing and tosses and turns (which is why I think this is what is causing the disturbed sleep) then it turns into snoring. He then tosses and turns. Goes on for hours. Since he's been on the singulair his chest is loads better and his nose isn't congested. He used to have a nose that was always full of crusty bogeys that I had to clear (gross I know) even during the day. He also used to constantly make an odd noise, half a cough, half a clearing throat noise which gp said she thought was post nasal drip. Thankfully, as I said he's stopped doing that since being on the singulair.

He's currently watching tv sat next to me and isn't breathing through his mouth.

Join the discussion

Join the discussion

Registering is free, easy, and means you can join in the discussion, get discounts, win prizes and lots more.

Register now